I was into the Dr on Tuesday and my hemoglobin has stabilized at least for a week. After the blood transfusion a week ago, it should have gone up two points to about 10.4 and that is where is was this time as well. The transfusion was with A neg blood which may have affected the higher level as well. Since I am A pos, I can get blood from A or O, either pos or neg.
My white cell and platelet counts are somewhat low though which will also need watching. The Dr has adjusted my prednisone down a little and I have an appt again next Tuesday.
Other than that I am feeling ok. My son and I traveled to Chicago last weekend and attended a TI99 home computer faire on Saturday. The Chicago User Group sponsors this every year to share and exchange hardware and software for this 27+ year old computer. About 20 people attended with a few reporting from a similar meeting in Germany last month. There is an internet based user group of over 500 members to which I belong.
We went downtown Saturday night for Gino's famous deep dish pizza. We walked part of the Magnificent Mile shopping area, visited the Apple Computer store and paid $32 for 3 hours of parking. Sunday, we visited the Science Museum for 5 hours and then drove back to Minneapolis. Traffic in Chicago was terrible, taking us an hour just to get from downtown to the O'Hare airport area. I made it home about 12:45 AM and slept later in the morning.
Thursday, October 25, 2007
Wednesday, October 17, 2007
Further setback
I was in yesterday for a blood transfusion and a further talk with my primary Dr. I discovered that my blood cells are now 30% donor (my brothers) and 70% my original. A few months ago it was reversed and supposed the change is in the bone marrow as well. In this light, the Dr has recommended that I do not go back to work on Friday.
I also met with my employer HR and health departments, who advised me that starting work on Friday would delay the start of my LTD payments. I would have to work 60% time just to offset what LTD will pay if I am not working. So, I will be classified as a "suspended" employee and will still be part of the company group plan as far as insurance benefits are concerned. I will be billed for my share of the costs and will have to pay those out of my LTD monthly check. There are also a lot of other benefit and organizational changes going on at work so I plan to let that situation settle down and consider going back to work in early 2008. Of course, there is no guarantee that my job will be there to return to. Hopefully, by then, my medical situation will be figured out as well.
Your prayers and support are still appreciated.
I also met with my employer HR and health departments, who advised me that starting work on Friday would delay the start of my LTD payments. I would have to work 60% time just to offset what LTD will pay if I am not working. So, I will be classified as a "suspended" employee and will still be part of the company group plan as far as insurance benefits are concerned. I will be billed for my share of the costs and will have to pay those out of my LTD monthly check. There are also a lot of other benefit and organizational changes going on at work so I plan to let that situation settle down and consider going back to work in early 2008. Of course, there is no guarantee that my job will be there to return to. Hopefully, by then, my medical situation will be figured out as well.
Your prayers and support are still appreciated.
Monday, October 15, 2007
Flashback to April
Seems like I am back to my situation back in April. Though not scheduled for a Dr appt for another two weeks, I sensed that my hemoglobin was low. I was tired, out of breath with little exertion, dizzy spells and getting slight headaches. So this morning, I called in and arranged for a blood test this afternoon. Turns out that my Hgb was 8.4 and white cell count was 2.3, both the lowest that they have been since I left the hospital in late May. My platelets are up to 133, the highest since before my BMT.
So, I will be in for a blood transfusion on Tuesday and the Dr has increased my prednisone. I have been on 20 mg every other day and now moving to 60 mg every day. I assume that after this, I will feel pretty good again. I was approved for long term disability pay through insurance and await a response from Social Security. I am seriously considering going back to work 1/2 time to see how that works out. It will seem like April again, working with regular trips to Dr for blood transfusions.
Over the past month, I have been taking inventory of my old TI99 computer collection and plan to travel to Chicago for a computer faire on Saturday. My son will help drive and we will stay part of Sunday to sightsee as well. My first home computer was the TI99/4 in 1980. I now have about 10 spares, 150 cartridges and miscellaneous hardware. There were close to 500 different cartridges produced, many after TI discontinued the computer in 1983. My most recent addition was a newly developed hard disk interface with a 2GB HD. There is still an internet based user group with over 500 members, 50 of which will probably show up in Chicago.
So, I will be in for a blood transfusion on Tuesday and the Dr has increased my prednisone. I have been on 20 mg every other day and now moving to 60 mg every day. I assume that after this, I will feel pretty good again. I was approved for long term disability pay through insurance and await a response from Social Security. I am seriously considering going back to work 1/2 time to see how that works out. It will seem like April again, working with regular trips to Dr for blood transfusions.
Over the past month, I have been taking inventory of my old TI99 computer collection and plan to travel to Chicago for a computer faire on Saturday. My son will help drive and we will stay part of Sunday to sightsee as well. My first home computer was the TI99/4 in 1980. I now have about 10 spares, 150 cartridges and miscellaneous hardware. There were close to 500 different cartridges produced, many after TI discontinued the computer in 1983. My most recent addition was a newly developed hard disk interface with a 2GB HD. There is still an internet based user group with over 500 members, 50 of which will probably show up in Chicago.
Saturday, September 22, 2007
Day 136
It has been a few days since my last Dr appt on Tuesday. My hemoglobin has dropped from a high of 11.5 on August 21 to 10.2 on Tuesday. Dr is still concerned about hemolysis (breakdown of red blood cells) but sees less jaundice in my eyes. He has added folic acid back to my medicine list. I took folic acid for several years, but stopped when I entered the hospital in May. I have also transitioned off the GenGraf and MMF, reduced Prednisone and started back on Bactrium. I am not sure if it associated but my appetite has reduced and taste has changed.
I have applied for both LTD (long term disability) from Aetna and Social Security Disability. I heard back from both about questions and their initial positive impressions. My short term disability from my employer ends on October 18th and, if approved, Aetna LTD would start October 28th. The SSD will take several months and will only offset part of the Aetna LTD. I will discuss possibly working part-time with my Dr at my next appt on Oct 2. The next month will be a time of some major changes either in my daily activity and/or income level.
I have applied for both LTD (long term disability) from Aetna and Social Security Disability. I heard back from both about questions and their initial positive impressions. My short term disability from my employer ends on October 18th and, if approved, Aetna LTD would start October 28th. The SSD will take several months and will only offset part of the Aetna LTD. I will discuss possibly working part-time with my Dr at my next appt on Oct 2. The next month will be a time of some major changes either in my daily activity and/or income level.
Tuesday, September 11, 2007
Day 123 Changes
My health has still not settled down and changes are underway. I am still feeling pretty good though experienced some nausea, stomach cramps and diarrhea in the past week. I will probably be experiencing more as I back off some of the medications.
My Dr says it appears that the engraftment is going backward since we started the prednisone in mid-July. Recent tests showed that 30% of my immune system is still active, a JAK2 genetic test is now positive again and there is still hemolysis of red blood cells. It is a battle between the new and old immune systems and the current medications are fighting the new while the new fights my body. The old immune system was fighting my red blood cells as well before the BMT. A DLI (Donor Leukocyte Infusion) from my brother may be required as a booster for the new immune system.
Anyway, I will drop out of the Hutchinson study on the chance that I was really getting MMF and not the placebo. I will taper off of the GenGraf (cyclosporine) within a week and reduce the prednisone from 90 to 40mg every other day. I will also restart the Bactrium which was stopped back in July. Rituxan IVs are also a possibility. I am back to Dr appts every week and cannot go back to work until November.
My application for long-term disability is progressing well for possible start on Oct 28 while I also work on the Social Security Disability application. The way things are progressing, I may need both though still hope to be working part time by then. Your prayers are once again appreciated.
My Dr says it appears that the engraftment is going backward since we started the prednisone in mid-July. Recent tests showed that 30% of my immune system is still active, a JAK2 genetic test is now positive again and there is still hemolysis of red blood cells. It is a battle between the new and old immune systems and the current medications are fighting the new while the new fights my body. The old immune system was fighting my red blood cells as well before the BMT. A DLI (Donor Leukocyte Infusion) from my brother may be required as a booster for the new immune system.
Anyway, I will drop out of the Hutchinson study on the chance that I was really getting MMF and not the placebo. I will taper off of the GenGraf (cyclosporine) within a week and reduce the prednisone from 90 to 40mg every other day. I will also restart the Bactrium which was stopped back in July. Rituxan IVs are also a possibility. I am back to Dr appts every week and cannot go back to work until November.
My application for long-term disability is progressing well for possible start on Oct 28 while I also work on the Social Security Disability application. The way things are progressing, I may need both though still hope to be working part time by then. Your prayers are once again appreciated.
Monday, September 03, 2007
Day 115
These postings are getting further between since I have little to report on my health. Everything is pretty stable and it is two weeks between appointments now. My last was on Aug 28th so next is on Sept 11. My blood counts are good with hemoglobin staying above 11 (11.4 at last test). Dr is still concerned about seeing some hemolysis so it should be higher. They are also watching my urine since some blood and protein were noticed a few weeks ago. I have now reduced my prednisone to 90mg every other day from the every day when I started on it.
We made it to the lake cabin near Bemidji the week before last. It was a nice trip though I could not do a lot that I would have liked to. We did have to cut up a large tree that had fallen across the lane. Just fun to be there with the whole family.
I made it to church again yesterday. It was the first day of the month and communion. It reminded me of the blood and body of Christ being similar to the blood and bone marrow received from my brother. Together, they make a miracle of extended life on this earth plus external life after that.
We made it to the lake cabin near Bemidji the week before last. It was a nice trip though I could not do a lot that I would have liked to. We did have to cut up a large tree that had fallen across the lane. Just fun to be there with the whole family.
I made it to church again yesterday. It was the first day of the month and communion. It reminded me of the blood and body of Christ being similar to the blood and bone marrow received from my brother. Together, they make a miracle of extended life on this earth plus external life after that.
Saturday, August 18, 2007
BMT + 100 days
Actually my 100th day since the bone marrow transplant passed a few days ago, so I have made it pretty far since entering the hospital on May 1. I had my 9th bone marrow biopsy on Thursday when they tried some new needles which seemed to work better. My biggest problem with the biopsy is lying in a cramped position which affects my arthritic knees. The quicker it goes, the better. I get some results back on Tuesday but don't expect any surprises.
I am feeling much better the last couple of weeks and am starting to get out. Did some shopping for a car battery and carpet for our washroom. Dr says I can stop using the mask and go to church on Sunday. Hope to see some of you there. We also plan to take a trip to the cabin in Bemidji next week. This will be the first time for me since Andrew and I were there in April and saw the ice go out. All of my care givers go back to teaching or attending school in a couple of weeks, but I am getting pretty independent and now driving as well.
While I am proceeding with applications for long-term disability and social security, I may be back to work before mid-October. Still need to taper medications and see how I react to the changes plus build up my endurance. A short trip out shopping or working around the house still tires me out. Still need approval from the Dr before going back to work
I am feeling much better the last couple of weeks and am starting to get out. Did some shopping for a car battery and carpet for our washroom. Dr says I can stop using the mask and go to church on Sunday. Hope to see some of you there. We also plan to take a trip to the cabin in Bemidji next week. This will be the first time for me since Andrew and I were there in April and saw the ice go out. All of my care givers go back to teaching or attending school in a couple of weeks, but I am getting pretty independent and now driving as well.
While I am proceeding with applications for long-term disability and social security, I may be back to work before mid-October. Still need to taper medications and see how I react to the changes plus build up my endurance. A short trip out shopping or working around the house still tires me out. Still need approval from the Dr before going back to work
Tuesday, August 07, 2007
BMT + 3 months
It will be three months tomorrow since the first day of my BMT on May 8th. Besides the GvHD which seems to be coming under control, I am feeling pretty good. I have stopped losing weight and starting to gain again. Due to the prednisone, I have an appetite, somewhat uncontrollable. I am starting a taper of the prednisone from 90 mg every day to 40 mg on alternating days. I have little nausea and normal bowel and urinary functions.
My blood counts were all within reason today though platelets and hemoglobin are still a little low. I did not need any fluids today, but there is still a question about a possible blood infection. So for the first time since May 2, all tubes have been removed. The PICC line that was put in several weeks ago was removed so next time they will start picking me with IV needles again.
But for the first time, I don't have an appointment for a whole week. The Dr says that I can even leave town and travel to the lake cabin in another week. Possibly in a couple of weeks, I can get out in public as well. It all depends on how things improve further. I did make it to the neighborhood party this evening though wore my mask and did not shake any hands.
My blood counts were all within reason today though platelets and hemoglobin are still a little low. I did not need any fluids today, but there is still a question about a possible blood infection. So for the first time since May 2, all tubes have been removed. The PICC line that was put in several weeks ago was removed so next time they will start picking me with IV needles again.
But for the first time, I don't have an appointment for a whole week. The Dr says that I can even leave town and travel to the lake cabin in another week. Possibly in a couple of weeks, I can get out in public as well. It all depends on how things improve further. I did make it to the neighborhood party this evening though wore my mask and did not shake any hands.
Thursday, August 02, 2007
35W Bridge
Just a note that we are all safe after the collapse of the 35W bridge yesterday. We had many calls from relatives since we drive close to it for every doctor appointment. We drive down either Washington Ave or University Ave near each end of the bridge though rarely cross the 35W bridge itself. Just last week, Anna and I drove across as we detoured to stop at the Dinkytown post office. Now have to contend with detours on the Washington Ave side from I-94. Our prayers go out to all the affected families.
I just got back from an appointment where things are going better still. Got some more fluids and they took some more blood cultures to check on the previous infection. I am back on GenGraf since my kidney function has improved and will start a taper on the prednisone next week.
I just got back from an appointment where things are going better still. Got some more fluids and they took some more blood cultures to check on the previous infection. I am back on GenGraf since my kidney function has improved and will start a taper on the prednisone next week.
Tuesday, July 31, 2007
GvHD + 84
Only 9 days since last posting so doing better with only 4 appointments to report. Still battling potassium and creatinine levels in my blood, indicating possible kidney problems. So I get IV fluids on each visit and need to keep drinking more water. There have also been more adjustments of medicines to help out. The prednisone is helping my appetite, but I still don't have my taste buds back. I have lost a few more lbs so my gut is probably not absorbing enough yet as well.
As part of the GvHD treatment, I am participating with a Fred Hutchinson Research Study where I either get MMF or a placebo along with the normal treatment. This is another 8 pills a day, though they could be what I took during the engraftment phase. This study could last up to two years and is meant to determine whether MMF helps in the GvHD phase. Note that the study is not listed at the web site so may be closed to participating research groups.
Not sure when I will be back to work. Earliest may be 2 months due to immunity problems and need to stay relatively isolated from people. Otherwise, I am feeling much better and getting things done around the house.
As part of the GvHD treatment, I am participating with a Fred Hutchinson Research Study where I either get MMF or a placebo along with the normal treatment. This is another 8 pills a day, though they could be what I took during the engraftment phase. This study could last up to two years and is meant to determine whether MMF helps in the GvHD phase. Note that the study is not listed at the web site so may be closed to participating research groups.
Not sure when I will be back to work. Earliest may be 2 months due to immunity problems and need to stay relatively isolated from people. Otherwise, I am feeling much better and getting things done around the house.
Sunday, July 22, 2007
Hospital again + 75
Sorry that it has been almost 2 weeks since I posted. The week of 10th, I was into the clinic everyday and couple unplanned to get fluids. Most of the tests were negative for GvHD except for the D-Xylose test that I had last Tuesday. Just got results back today from Mayo Clinic and it definitely indicated GvHD. I am now on 90mg Prednisone per day and added CellCept back for treatment as well. Got to drop Ursodiol but added 4 "horse" tablets of Bactrim each day.
Also the clinic had taken blood cultures for several days starting the 13th. They got the first results back on Tuesday (after I got home from a day of D-Xylose) and had me go straight to the hospital. I didn't feel too bad but Drs were worried since it was a very septic infection in my blood. On Wed, they pulled out my central line and ran cultures on that as well. On Thurs, they ran a PICC line which accomplishes the same purpose as the old central line. It hangs out of my right bicep area down to my elbow, dangling frrom under any short sleeve shirt. I got out of the hospital about 1pm on Saturday and was back at the clinic at 8:30 this morning. Already have appts for Monday and Tuesday and probably more this week.
It is good to have some confirmation of why I have not had an appetite and I have lost weight. Official weight from this morning was 197 lbs, 70 lbs less that my bloated high back in May and 55 lbs less than when many of you saw me last.
Thanks for all your prayers. Last Monday, after my sister came back from a 2 week mission trip to Brazil, we had a family prayer meeting at my house. Little did we know that the blood culture test that may have saved my life was already underway. Just a few days later and results could have been much different. God works in mysterious ways.
Also the clinic had taken blood cultures for several days starting the 13th. They got the first results back on Tuesday (after I got home from a day of D-Xylose) and had me go straight to the hospital. I didn't feel too bad but Drs were worried since it was a very septic infection in my blood. On Wed, they pulled out my central line and ran cultures on that as well. On Thurs, they ran a PICC line which accomplishes the same purpose as the old central line. It hangs out of my right bicep area down to my elbow, dangling frrom under any short sleeve shirt. I got out of the hospital about 1pm on Saturday and was back at the clinic at 8:30 this morning. Already have appts for Monday and Tuesday and probably more this week.
It is good to have some confirmation of why I have not had an appetite and I have lost weight. Official weight from this morning was 197 lbs, 70 lbs less that my bloated high back in May and 55 lbs less than when many of you saw me last.
Thanks for all your prayers. Last Monday, after my sister came back from a 2 week mission trip to Brazil, we had a family prayer meeting at my house. Little did we know that the blood culture test that may have saved my life was already underway. Just a few days later and results could have been much different. God works in mysterious ways.
Tuesday, July 10, 2007
Day + 63
Well, I went down hill after Friday and had to go into clinic on Monday for some more magnesium and fluids. This helped me some but now I get more blood on Wed. I saw the Dr again today and will again on Thurs.
Other than hemoglobin, my blood counts are ok. Dr. also reported that my last bone marrow biopsy looked good with all cell lines growing well and still showing engraftment. Since none of the tests confirm any acute GvHD, the Dr ordered a lip biopsy which was done this afternoon in the Dermatology Clinic. They took a piece of salvia glnd from inner lower lip and a sample of some flaky skin. They also examined my whole body for anything suspicious.
Dr. thinks that I may have chronic GvHD which normally occurs after 100 days. If it is cGvHD, treatment would probably be Prednizone and could continue for several years.
Other than hemoglobin, my blood counts are ok. Dr. also reported that my last bone marrow biopsy looked good with all cell lines growing well and still showing engraftment. Since none of the tests confirm any acute GvHD, the Dr ordered a lip biopsy which was done this afternoon in the Dermatology Clinic. They took a piece of salvia glnd from inner lower lip and a sample of some flaky skin. They also examined my whole body for anything suspicious.
Dr. thinks that I may have chronic GvHD which normally occurs after 100 days. If it is cGvHD, treatment would probably be Prednizone and could continue for several years.
Friday, July 06, 2007
Day + 59
What a difference a few days make since I have been feeling much better since Tuesday. This was somewhat tempered by getting up early this morning and having both a sigmoidoscopy and another bone marrow biopsy. I still have little appetite but diarrhea and dry mouth have let up.
The initial sigmoid test was negative for GvHD though samples were taken to be analyzed. Other tests of stool, urine and blood culture have also been negative. Blood counts are ok except for the hemoglobin which keeps dropping. I am also now taking eye drops for dry eyes.
The bone marrow biopsy went very well this morning, taking 1/2 the time of the last. The difference was experience of who did it and use of a bigger (8 gauge) needle. I have my next Dr appt next Tuesday when I will learn more from the biopsies that I had today.
GvHD, in answer to Lori's question on the June 12 post, is basically when the new donor white blood cells attack rapidly growing host cells. This is beneficial when the the attacked cells are remnants of previous cancers (tumors). It it not pleasant and can be life threatening if the cells are GI tract, lungs or liver. Skin or eye GvHD can also occur.
For Joyce, my top rating on fireworks, viewed on a 46" HD TV, is for Boston. Of course, the only other one I watched was New York. NY was 30 minutes long and seemed to be launched from a broader location. Boston was only 20 minutes and seemed more concentrated. Both were choreographed to music, but you can't beat the Boston Pops Orchestra for smooth medley transitions. I especially liked the Sesame Street song synched with fireworks in the shape of a toy block or the numbers 2 and 3. NY synched those with "Take me out to the ball game". Over all, I would have much rather been with my son and daughter in Bemidji, watching their fireworks from the beach.
The initial sigmoid test was negative for GvHD though samples were taken to be analyzed. Other tests of stool, urine and blood culture have also been negative. Blood counts are ok except for the hemoglobin which keeps dropping. I am also now taking eye drops for dry eyes.
The bone marrow biopsy went very well this morning, taking 1/2 the time of the last. The difference was experience of who did it and use of a bigger (8 gauge) needle. I have my next Dr appt next Tuesday when I will learn more from the biopsies that I had today.
GvHD, in answer to Lori's question on the June 12 post, is basically when the new donor white blood cells attack rapidly growing host cells. This is beneficial when the the attacked cells are remnants of previous cancers (tumors). It it not pleasant and can be life threatening if the cells are GI tract, lungs or liver. Skin or eye GvHD can also occur.
For Joyce, my top rating on fireworks, viewed on a 46" HD TV, is for Boston. Of course, the only other one I watched was New York. NY was 30 minutes long and seemed to be launched from a broader location. Boston was only 20 minutes and seemed more concentrated. Both were choreographed to music, but you can't beat the Boston Pops Orchestra for smooth medley transitions. I especially liked the Sesame Street song synched with fireworks in the shape of a toy block or the numbers 2 and 3. NY synched those with "Take me out to the ball game". Over all, I would have much rather been with my son and daughter in Bemidji, watching their fireworks from the beach.
Tuesday, July 03, 2007
Day + 56
Well, the GvHD question is open again. I was in for an appt this morning after generally not feeling too good the last few days. I have been fighting bouts of diarrhea on Sunday and Monday, but am thankful clear at the moment. Didn't sleep very well last night because of dry mouth.
My creatinine has been high due to the diarrhea and lack of kidney function so I still try to drink at least 8 cups of water a day. I essentially have no appetite but try to eat a variety of food, never able to finish even 1/2 a normal portion. The clinic gave me more magnesium and fluids IVs today. I was told to come in Thursday as well if I have more diarrhea and dry mouth.
Any way, I had a stool sample, a urine sample, and a chest x-ray plus special blood cultures taken. X-ray was ok; no fluid in lungs. I go in Friday at 7:30am for a sigmoidoscopy followed by another bone marrow biopsy. I also had a Schirmer test for dryness in my eyes. This is done by placing a piece of paper under the lower eye lid and measuring how many tears are produced.
I look forward to my July 10th appt to get the results of all these tests and determine what we do next.
Keep looking up!
My creatinine has been high due to the diarrhea and lack of kidney function so I still try to drink at least 8 cups of water a day. I essentially have no appetite but try to eat a variety of food, never able to finish even 1/2 a normal portion. The clinic gave me more magnesium and fluids IVs today. I was told to come in Thursday as well if I have more diarrhea and dry mouth.
Any way, I had a stool sample, a urine sample, and a chest x-ray plus special blood cultures taken. X-ray was ok; no fluid in lungs. I go in Friday at 7:30am for a sigmoidoscopy followed by another bone marrow biopsy. I also had a Schirmer test for dryness in my eyes. This is done by placing a piece of paper under the lower eye lid and measuring how many tears are produced.
I look forward to my July 10th appt to get the results of all these tests and determine what we do next.
Keep looking up!
Thursday, June 28, 2007
Day + 51
I was to the Clinic twice this week, once on Tuesday and then today. On Tuesday, we learned that the endoscopy showed no GvHD in the upper GI tract but I was still having some diarrhea so I was told to obtain another stool sample. My hemoglobin was down to 9.1 the lowest it has been since before the BMT. My creatinine level was very high reflecting lower kidney function so I also received some IV fluids while at the clinic. The Dr also dropped the GenGraf for a few days and lowered the Acyclovir.
So today I received 2 units of blood (rbcs) and some more magnesium. My creatinine was down and I have had little diarrhea so was not able to get a sample. The Dr has now restored the GenGraf at a lower level and the Bactrium which I also did not take this week.
I was tired due to the low hemoglobin the last few days but my digestive system seems a little better. We are in a period of balancing the side effects of the medicines versus the benefits. Drs say the fluctuating hemoglobin is still ok this early in the recovery, but I worry that my old autoimmune system is still in effect.
Hope to learn more next week after another bone marrow biopsy on Friday July 6 plus a regular appt on Tuesday July 3. There will be no time off on the 4th for me; I will be here popping about 30 pills a day.
So today I received 2 units of blood (rbcs) and some more magnesium. My creatinine was down and I have had little diarrhea so was not able to get a sample. The Dr has now restored the GenGraf at a lower level and the Bactrium which I also did not take this week.
I was tired due to the low hemoglobin the last few days but my digestive system seems a little better. We are in a period of balancing the side effects of the medicines versus the benefits. Drs say the fluctuating hemoglobin is still ok this early in the recovery, but I worry that my old autoimmune system is still in effect.
Hope to learn more next week after another bone marrow biopsy on Friday July 6 plus a regular appt on Tuesday July 3. There will be no time off on the 4th for me; I will be here popping about 30 pills a day.
Friday, June 22, 2007
Day +45
This is my second report this week in only four days. It has been 45 days since the BMT and possible GvHD is still under investigation. The stool sample from last week was negative, but the results of endoscopy on Tuesday were less certain. I will get a final report on the endoscopy next Tuesday.
I still don't have much appetite and feel nauseated after eating and taking all the pills. I am still fighting diarrhea and urination every hour. I was supposed to have a Dr appt today, but felt weak and tired yesterday so went in then instead. My hemoglobin was 10.7 so no transfusion was required. I did get a liter of fluid while I was there and feel a little better today. My next appt is on Tuesday
I still don't have much appetite and feel nauseated after eating and taking all the pills. I am still fighting diarrhea and urination every hour. I was supposed to have a Dr appt today, but felt weak and tired yesterday so went in then instead. My hemoglobin was 10.7 so no transfusion was required. I did get a liter of fluid while I was there and feel a little better today. My next appt is on Tuesday
Monday, June 18, 2007
Day +41
Hopefully, I can get a status post out more frequently, but it seems like weekly now. It has been 41 days since the BMT and I may be in a GvHD phase now. Last week, I had three appointments and spent over 14 hours at the clinic. Thursday stretched out with a decision to give me fluids and a blood transfusion. My regular Dr is on vacation so the PA thought they could get the blood in before we left for the day. The blood bank reported back that they still needed more time to match my blood because I still have the extra antigens that existed before the BMT. It is unknown whether those will be eventually cleared up. So we were back in on Friday for another 4 hours. Both the fluid and blood have perked me up some over the weekend
There have been no results of the stool sample from last Thursday and I have an endoscopy scheduled for tomorrow. Both of these should answer part of the GvHD question.
There have been no results of the stool sample from last Thursday and I have an endoscopy scheduled for tomorrow. Both of these should answer part of the GvHD question.
Tuesday, June 12, 2007
GvHD + 35
Sorry for the delay in posting but things have been pretty boring. Each day seems like the next, but today may be the start of a new phase. I have been tired recently, napping several times a day or falling asleep watching television. I now see the doctor about twice a week and am gradually reducing medication (now down to about 30 pills a day).
After a shower this morning, we discovered a rash on the inner side of my right thigh. Doctor also ordered a stool sample which I must deliver on Thursday. There has also been some talk about an endoscopy to check my digestive tract. I am still having problems with nausea and lack of appetite and have lost over 25 lbs from what I weighed before checking into the hospital on May 1.
It has been 35 days since the BMT and I am thankful that the new bone cells have engrafted and not all my hair has fallen out. Now it looks like the negative symptoms of GvHD have started.
After a shower this morning, we discovered a rash on the inner side of my right thigh. Doctor also ordered a stool sample which I must deliver on Thursday. There has also been some talk about an endoscopy to check my digestive tract. I am still having problems with nausea and lack of appetite and have lost over 25 lbs from what I weighed before checking into the hospital on May 1.
It has been 35 days since the BMT and I am thankful that the new bone cells have engrafted and not all my hair has fallen out. Now it looks like the negative symptoms of GvHD have started.
Monday, June 04, 2007
100% Donor cells
The results of my bone marrow biopsy shows 100% total donor engraftment. The doctor even seemed surprised when he pulled up the results on the computer this morning. This means that my brother's stem cells have taken over and eliminated my old defective bone cells. My hemoglobin reached a high of 11.9 and platelets have increased from 51 to 79 in the last 6 days, more evidence of the new cells. On the negative side my magnesium was down so I needed an infusion today and my creatinine is up to 1.68.
The challenge now is to manage all of the medicines to prevent GvHD (Graft versus Host Disease) as well as getting my normal digestive functions back in order. My weight was 235 lbs fully clothed this morning versus about 248 on check in to the hospital and 266 with the fluid retention and hospital gown. With all the pills and diminished taste and saliva, I still cannot eat normally and feel nauseated most of the time.
But isn't God great! He guided me through the valley of the shadow of death and will continue to heal the rest of my body.
The challenge now is to manage all of the medicines to prevent GvHD (Graft versus Host Disease) as well as getting my normal digestive functions back in order. My weight was 235 lbs fully clothed this morning versus about 248 on check in to the hospital and 266 with the fluid retention and hospital gown. With all the pills and diminished taste and saliva, I still cannot eat normally and feel nauseated most of the time.
But isn't God great! He guided me through the valley of the shadow of death and will continue to heal the rest of my body.
Saturday, June 02, 2007
BMT + 25
Well, its Saturday and I did not have to go to the Dr today. Yesterday, the Dr said that everything was normal, at least as good as expected for me at this time. My hemoglobin and platelets are still below that for an average person, but still where they should be for a BMT patient. Of course, as long as I am taking all these pills, it is a propped up normal. They gave me more magnesium on Thursday but did not need to on Friday. I get the day off tomorrow as well.
The negative of not going into the clinic is that we have to flush my central line at home. Andrew did it this afternoon, but I was a little nervous.
On Friday after my appointment, one of the clinic Drs asked me to talk to a patient who had completed a week of tests to qualify him for a BMT, but was still not committed to moving ahead next week. This young man discovered he had myelofibrosis last Sept. He has an unrelated donor, but is getting a mini-BMT similar to mine. I related my experiences and directed him and his wife to this blog for further details. I also suggested that they setup a CaringBridge site. I gave credit to God and the power of prayer. Please pray for Keith as well since he decided to move ahead with the BMT.
The negative of not going into the clinic is that we have to flush my central line at home. Andrew did it this afternoon, but I was a little nervous.
On Friday after my appointment, one of the clinic Drs asked me to talk to a patient who had completed a week of tests to qualify him for a BMT, but was still not committed to moving ahead next week. This young man discovered he had myelofibrosis last Sept. He has an unrelated donor, but is getting a mini-BMT similar to mine. I related my experiences and directed him and his wife to this blog for further details. I also suggested that they setup a CaringBridge site. I gave credit to God and the power of prayer. Please pray for Keith as well since he decided to move ahead with the BMT.
Subscribe to:
Posts (Atom)